Carol Torp was born and raised in Orlando, Florida. She attended the University of Florida and graduated in May 1990, with a BS in Industrial and Systems Engineering. From there, she accepted a job with Procter & Gamble in Cincinnati, Ohio, as a Marketing Analyst. She married Eric in April 1991. They had a daughter, Kirsten in April 1995. Carol returned to working full-time when Kirsten was 8 months old. In January 1998, after two years of struggling to balance work and family, Carol left P&G to stay home full-time. Her second child, Jared, was born two weeks after her dissection in July 1998. She enjoys volunteering at church, scrapbooking and traveling.
I'm a 32 year old mother of two living in Cincinnati, Ohio. Like many people who have posted on this board, I never thought this could happen to me. I was 30 years old and seven months pregnant with my second child (July 2, 1998), when I had a severe pain in the middle of my chest. The pain moved to the middle of my back and shot down to my lower back. Thank God, I had a cordless phone in my hand. I had been talking to a friend (here comes the only funny part of the story) while I was putting on support hose for the varicose veins in my legs, I said to my friend "these hose are so tight, they'll probably back the blood up into your heart and give you a heart attack...I'm getting a pain in my chest." She said, "are you all right?" and I said "yeah, it's probably just indigestion." That's when it got bad. I hung up with her, called my OB, got put on hold..twice, hung up and called 911.
Thankfully, my 3 year-old daughter slept through everything until my husband was able to get home. Talk about events just lining up, I had just returned from a 2-week stay in Orlando with my parents and was preparing to leave for a week stay at my in-laws in Michigan the next day. My parents were driving up to Cincinnati to drop off some things that day. They arrived 2-hours after I was taken to the ER.
I was able to tell several people about the pain in between screams and the doctors took me right to CAT scan. They told me that I had an aneurysm in my aorta. The last thing I remember about being in the emergency room was laying there watching everyone cry, wondering when I was going to die and whether my unborn son would be joining me. I actually told my mom to call my friends in Florida that night so that they wouldn't be shocked when she called to tell them I was dead. That did my mom in, she actually told them exactly what I said.
I woke up 3 days later at a different hospital with all kinds of tubes running in my body. They did not do surgery, but the pregnancy complicated matters. The surgeon couldn't find any other people who had dissections while pregnant. The only thing he prescribed was keep the blood pressure low (which was more difficult than anyone expected), have a c-section instead of going through labor, and don't have anymore children. My OB's were great and the ICU nursing staff at Good Samaritan hospital is wonderful. I couldn't have gotten through this without them.
About two weeks after I was admitted, at 30 weeks gestation I couldn't keep my son from entering the world any longer. He was 3 pounds 14 ounces and looked absolutely perfect. I didn't get to see him until the next day. I was completely drugged out during the surgery, I couldn't keep my eyes open.
I spent another two weeks in the hospital trying to get my blood pressure under control. I never had a BP problem before this and I had been to the OB the day it happened and there was no indication of what was about to happen. The OB that saw me that day was racking her brain trying to think if there was anyway she could have known.
My son came home from the hospital 5 weeks after he was born and has been doing great. He has amazed everyone. Today, you can't even tell he was a premature baby.
I went to see a geneticist in September to see if I have Ehlers-Danlos type IV. I still don't have a diagnosis because my tissue test came back normal. The doctor I saw still thinks I have this disorder based on a physical exam, but he has not given me a final diagnosis. I've been in denial for the last year, trying not to think about what could happen, but I think I have to start thinking about it. Type IV Ehlers-Danlos is the most serious type you can have. From the information I have been able to get about this disorder, it usually takes your life in your 40's. Most die of spontaneous arterial ruptures. I'm not ready for this diagnosis, which is why I haven't hounded the doctor for an answer.
I have really been helped by this board. I realize that God has truly blessed me and my family. I'm amazed at the number of people who have experienced similar events. I've learned that I need to ask my doctor some additional questions. I appreciate everyone's willingness to share their stories.
I'm not only dealing with my own fears, but my daughter has had some problems dealing with all of this as well. She was in the emergency room and saw what I consider to be too much. I had to ask (that's nice for order) my husband to take her out as I was vomiting and having an NG tube shoved up my nose. She didn't see me again for a week, and probably only saw me about 4-5 times during my month-long stay in the hospital. She doesn't understand why I can't pick her up anymore. She can't go to sleep at night without someone laying down with her. On top of all that, she has to deal with a little brother that everyone fawns all over. I've tried to make sure that we still have time alone together, but it doesn't seem to help. If anyone has any advice in this area, please e-mail me.
Update 1 Mar 2000
I finally had the nerve to call my geneticist to get final word about the Ehlers Danlos (EDS) diagnosis. He still thinks that I have the Vascular type of EDS even though a secondary test was not performed. He said that there was research being done in Washington State and that my tissue samples would be part of that. It seems there are a lot of people with visible signs of Vascular EDS who test normal with the current procedures. I should know the results of that by March. If they don't have a test that shows that I have EDS, then my kids can't be tested. We will have to wait to see what their bodies show. Until then, they can't be involved in any strenuous exercise or contact sports. I take 2 grams of vitamin C a day. It's supposed to strengthen my blood vessels (secondarily, it has kept me from getting colds!).
I'm down to once a year CT scans to check the dissection and if the office people read my last scan results right, my aorta is down to 3.5 cm. I believe when it happened it was up to the 5 cm range because they did consider surgery. I still see my nephrologist at 6 month intervals to control my blood pressure.
Life is pretty much back to normal. The kids are doing well. Jared is a big guy, 27 pounds, for such a tiny start. Kirsten still has occasional trouble emotionally with everything that happened. We are getting some trauma therapy for her. We just started, so we'll have to see how it goes. We're still laying down with her at night. I still have my own fears about the future, but I know God isn't ready for me yet.
Update: 2 Dec 2002
It's been 4 years since my dissection and all is still stable! We are thankful for that. My daughter, however, has just been diagnosed with mitral valve prolapse, aortic insufficiency (aortic valve prolapse) and aortic root dilation at 7 years old. I'm having her seen by the geneticist in March to see if she shows signs of Vascular Ehlers Danlos. She'll be rechecked by the cardiologist at that time. Does anyone have any experience with children having these problems. I know she's really nervous about it and I can't calm her fears because I have my own. She's been having a lot of heart palpatations which scare her. Right now, the doctors don't seem to be worried about it.